The fragility of life

Declan’s updates will continue tomorrow.

Tonight I will only post a few words…a sad event occurred in the PICU this evening and it again reminded me of the fragility of the life God has given us.  We are not promised any time here on earth.  None of us.  We need to make the most of what was given us, enjoy every minute to the best of our ability and love those around us with all our heart.

Please pray for those with the heaviest hearts this evening…I know I will be.

1st chemo treatment today

Declan didn’t have a particularly restful night which has become kind of common place.  He has a strong will, even against his pain medication and struggles against it.  It usually takes him quite a while to settle himself each day or night.  Last night was no different.

Everything else, however, went smoothly…the lung x-rays are still providing good news and his blood counts & cultures have been all clear.  Great news!

Declan had surgery this morning to install a new central line through which he will receive some of his chemotherapy as well as some of his IV meds and fluids.  The surgery went off without any issue and Declan was brought back to his room in preparation for his chemo.

Dear Lord, I’m not sure I’m ready for this…I mean I know in the end it will benefit Declan but the Mommy in me is literally dying inside.

As is the case, it seems, it took awhile to get everything lined up.  The first dose of chemo is to be infused into a port in his head (surgically installed during last Thursday’s operation) and is intended to attack the primary tumor, secondary tumor and any stray cancer cells.

Sick feeling all day about injecting poison, albeit good poison, into my son’s brain. I mean how is he going to react?  Scream? Ok, that can’t happen because he’s on a ventilator, I know…but I also have come to learn; a crazed with worry Mother’s mind works like a Stephen King novel. Will he convulse…insert your own image of that here…mine is just too awful to write about.  Begin vomiting immediately?  I mean my mind is my enemy today.

So it’s time.  Oh boy, here we go. Dr. Chang (his Oncologist) is all gloved up and has prepared the port for the injection.  Tears are streaming down my face, I’m praying to God so fervently the words are tumbling over each other; all the while I’m stroking Declan’s hand and trying to convey with my eyes my sincere apology to my dear, sweet son for what is about to happen.

Here goes the needle…

Wincing…but the only wincing is me.  I keep forgetting what a tough customer my son is.  Ok, thank goodness that didn’t bother him.

Now in goes the chemo.  (The way it was put in today, it is pooling (for lack of a better term) in the CF fluid in his brain before the valve is released and it is carried throughout his body.)  So we waited the 5 minutes until the valve was released…alternately holding my breath and shifting between the pins and needles I feel I am standing on…and still no reaction.

For the next hour, we are pacing, alternately holding his hand, praying and discussing his pain levels with the nurses because while he doesn’t seem miserable, he does seem a bit uncomfortable.  Sadly, we have become accustomed to this because for whatever reason, Declan seems immune to pain meds…not completely mind you but when he should be knocked out for hours, he’s out for 10-20 minutes. It’s nuts. So we’re discussing back and forth and then it happens…Declan fell asleep.

We are, of course, prepared for him to wake up at any minute.  But a minute stretched to 10 minutes to an hour to now almost 5 hours…and he is still sleeping. This is the longest period of uninterrupted sleep Declan has had in over two weeks…and he is peaceful.

We understand that this experience is not typical.  We also understand the power of prayer and what a legion of prayers said on behalf of one person can do.  Thank you. And we know many days in our future will not be this pleasant…but if you remember from yesterday, we are choosing to live in the moment.  So for now, we are enjoying this rest for Declan.

BTW…Do your stuff chemo, we’re counting on you.

Holy Week, we ask for prayers and a miracle

Declan starts chemo today and I ask that everyone pray hard during this Holy Week. “Elijah went up to the top of Mount Carmel, then he bowed on the ground and put his face between his knees; and said to the servant, go up now look towards the sea. So he went and said there is nothing. And seven times; he said go again. Then it came to pass the 7th time he said there is a cloud as small as a man’s hand rising out of the sea.” Elijah believed in persistent praying. Seven times he bowed in prayer; seven times he sent his servant to see if God answered yet. I ask that everyone pray this week for what is said will be a miracle, that the chemo work and that the MRI next week show the turmor is shrinking. Please pray for sweet baby Declan, his healing … may God grant us an Easter miracle.

Roller coaster of emotions

Today has been a tough day…for Stan and I.  Thankfully, Declan has had an uneventful day.

This morning we got the good news that his lung has re-inflated!  The x-ray revealed it was just about perfect.  He has rested comfortably for most of today and tonight promises to be more of the same in preparation for tomorrow’s big day.  First thing in the morning Declan is scheduled for surgery to install a new central line which will act as a mechanism to draw blood as well as infuse his chemo drugs and related medications.  After we get back to his PICU home away from home, his first round of chemo begins.

It seems almost counter-intuitive to be excited about chemo but after this morning’s chat with our Neurologist, it can’t begin soon enough.

So what did we learn?  It was not a whole lot more than we already know…Declan has a rare form of cancer which is aggressive; he has a primary tumor in his brain which is growing, a secondary brain/spine tumor which is mostly gone but could start growing again at any time (maybe it already has) and a known tumor in his kidney which is gone.  Presumably there are more tumors which we don’t know about yet.  Ugh. We also learned this primary tumor is growing, and rapidly.  We looked at the scans from the 9th until the 26th and there is a visible difference.  The tumor is advancing.  (I’m sitting here shaking my head…my good Lord, those words bring a chill to my whole body.)

We were told the chemo has to work.  Maybe it was the words used today or maybe I just heard them differently or maybe it was the tone it was said today…but it hit me square in the jaw.  Kind of like March 9th all over againI mean, I know the chemo needs to work…that’s part of the deal with beating cancer, right? Maybe it was the time frames which were thrown around this morning in the context of my son’s life if it doesn’t work.  But the point was driven home (like a major league line drive back at the pitcher)…the chemo has to work, work quickly and work well.

How do you marry that information with our mantra of one step at a time?  How do you keep a smile on your face and put up a strong front for Declan with that information floating in the forefront of your mind?  How do you bring yourself back to today; away from the horrific visions in your head which keep coming back…over and over and over again?  How in the world will I ever stop crying long enough to support my son through this?

Again, Stan and I have turned to each other for support and unbelievably, we dried up the tears and resolved ourselves again to live in the moment.  To enjoy all the victories, however large or small.  To take all the setback’s in stride knowing they have been put there for a reason…a reason we still cannot fathom but believe come with a higher purpose.

So while I expected to be sobbing while writing tonight’s post…I am actually sitting across the room from sweet Declan…listening to him snore and chuckling to myself because it sounds so darn cute.  It really does pay to live in the moment! :)

God Bless you all!

To the lady in the mini-van…

…when I acknowledged my mistake (starting to head through the intersection when you had the right of way) and you clearly saw me acknowledge my mistake… was it necessary to lay on the horn, shake your finger at me (multiple times, might I add) and scold me with your eyes?  Really?

I guess at a different point in time I may, and perhaps have, reacted as you did.  But maybe it was put there as a reminder to me that everyone has their own life and events going on it.  Events that are important in their own right simply because they are important to you.  Maybe you have something equally horrible going on or maybe you don’t…maybe you’re just having a bad day, who am I to say what is horrible for anyone?  Moving forward, I’m going to try to remember this as I walk through my life.

So back to my life…because it IS important to me :)

I went home yesterday for what has become my weekly visit with the boys.  As I was unloading my suitcase from the car, two of Will’s friends approached me.  These wonderful young men had set-up a lemonade stand in our neighborhood to raise money for Declan…and it was not lemonade weather yesterday so I’m sure it was no easy task.  They proudly presented me with a ziplock baggie full of money…$111 to be exact.  $111?!  Wow, I was completely blown away.  Such amazing young men to do that for their friend’s little brother! I wanted to scoop them both up and shower them with hugs and kisses for their selfless act but thought better of it from an embarrassment factor.  Who knows, maybe I’ll scoop them up one day soon…watch out guys! :)

I arrived home to find my house filled with the boys cousins, Stan’s Sisters, my brother in law and of course, Nana and Grandpa…it was such a nice feeling to be surrounded by the craziness that is our family.  It really is fun to be around our family.  Cole and I had a nice snuggle while the older boys watched the Kids Choice Awards.  Afterward, Brady and I sneaked into the playroom to watch a movie…where I promptly fell asleep.  So much for sneaking downstairs to blog!

Cole was up at 3am and then again at 6am…it was nice to be back into the normal night time groove.  We went to church this morning…it was comforting and sad because we couldn’t be there together as I always enjoyed our time together at church but I’m glad we were able to go.

Before I headed back to the hospital, Will, Brady and I played “Toog” on the trampoline and jumped around for awhile.  They really are all together fun and amazing boys.

Ok, so the update on Declan.  (Sidebar, we have found that the “fine print” which describe the risks in the surgery authorization forms are always things that “rarely happen”…uh huh, sure.  So far we’ve had a few things happen which “rarely happen”.  Ah, Declan you love to keep us on our toes.  Don’t you?)  So we have been watching his left lung as it collapsed a bit during surgery, perhaps due to positioning (“fine print”).  Yesterday afternoon the steps they were taking via the ventilator were not working as our doctor would have liked so a bronchial scope was ordered to see if some of the pathways to the rest of his lung were clogged with mucus.  Off to the waiting room we go for the procedure.  The scope went well and they expected to see his lung come back over night…wrong.  Successive x-rays revealed it was still collapsed so Declan’s doctor ordered another scope today where they would be more aggressive in going after the clogged areas.  So off we went to the waiting room again.  Dr. Chester believes he was able to get significantly more this time and his x-ray revealed we may be in business again. Another x-ray tomorrow morning will be the final tell so we’re looking forward to it.  If that’s the case, he may finally be able to be weened from the ventilator.  Woohoo! Then we can work on picking him up!!

The real thing we’re waiting on is for chemo to begin.  We’re on hold until the lung resolves itself so we’re hopeful we can begin on Tuesday.

It sound very weird to be excited about introducing chemo into my dear sweet boy but we know it is the catalyst to begin the hard work of shrinking the primary tumor in his brain and removing the cancer from his body.

Thank you again for all your prayers and support…we know they are propping up Declan…and us.  God Bless you all.

Today is my 7 month birthday!

Woohoo!  I would much rather have been home celebrating with my twin brother, Cole, and the rest of my family but know I will have many more opportunities over the years to celebrate with everyone together.

I kind of felt like I wanted to give my parents something happy to remember this day…I can tell they really weren’t looking forward to “celebrating” here.  So I thought and I thought and I thought about what it could be.

Coming through surgery with no issues?  That sure did work (even though they were pretty scared) but that was yesterday.  So I thought some more…and then it popped up!  My gift idea…

…my first tooth has arrived.  It is helping to reminded them that in all the madness that is going on around us…and there’s a lot…that wonderful things in life are still happening and they’re happening to me.

Surgery Update

Today has been a mostly restful day…thank God!  As Nana posted last night, Declan’s surgery went well yesterday.  Dr. Post was able to remove the tumor from the brain stem and spinal cord but had to leave a small section on the artery to not risk a bleed.  The collective sigh released by us and our family members who joined us in the waiting room was probably felt throughout the room. That part of the surgery took about 5 hours (due to a late start and the actual surgery began at 1:30).   I must admit as happy as I felt, I was still unsettled because I knew there were at least 2 more hours of surgery ahead for Declan.

The next part of surgery was focused on the EVD (“brain drain”).  We were unsure as to whether or not the exit location to the current EVD would be moved further away from the entrance to the ventricle…the belief was the leaking fluid over the past two weeks was from some of the cerebral fluid taking the path of least resistance and coming out around the tube instead of through it…or to move it completely internal.  Our Oncologist, Dr. Dean, wanted it moved inside to give one less site for the potential introduction of infection once chemo begins.  (Our vote is for internal because it will be easier to hold Declan again…you see it’s been over a week since we have been able to hold him.  Torture!)

The internal won out and Declan is no longer a “cotton top” with that big white bandage.  It’s so nice to see his hair again!

Last night after we were able to come back to his room, Stan handed me a baggy (with his hospital label we have gotten so used to seeing) with clippings of his hair and the note, his first hair cut.  A very nice gesture but hardly what I envisioned for this life milestone.  Ah well, I guess it’s a decent ‘war story’ for Declan later in life! Can’t you just see it?  Two kids on a playground…”Oh yeah?  Well MY first hair cut was done when I had brain surgery.”  :)

It took awhile for us to get back to the room and for them to get Declan settled again…you can’t imagine the volume of equipment and wires that accompany my son on his travels between the OR, CAT scan or MRI rooms…staggering.  (Here are some pictures from Declan’s trip to the MRI room today to give you an idea.)

Daddy watching over the preparation for MRI transport. Declan’s bed is behind all the wires.

Here I go!  Can you see me?  I’m the tiny one in the middle!

Once back in the room, the idea was to allow his sedation to wear off to the point he would start moving his arms and legs.  His movement has been limited and believed to have been impacted by the spinal tumor.  Um, yeah…not so happy about that because anyone who goes through surgery knows right after surgery is really not the time you want to be woken up. Stan headed home to be with the boys in the morning and I stayed to help guide Declan through the night.  Geez, I tried so hard to be supportive…stroking his hands and face…but true to form, our tough guy was just not “acting out”…and I started to fall asleep while standing next to his bed around 2:30.  Our nurse, LaToya, assured me she would wake me up if anything significant occurred.  Next thing I know it’s 6am.

LaToya told me the decision was made to sedate him (even though Dr. Post wanted him to come around more) because it was apparent he wasn’t comfy.  From that point forward, the decision was to keep him comfortable to keep his heart rate in line and then work towards slowing up the meds perhaps tomorrow.  That is pretty much where he has been for much of today.

He did take a lengthy trip down for an MRI.  Stan rocked and made me stay and take a nap…ah, it was heavenly. Since his return, he’s been resting comfortably.  Whew!

Thank you all for your prayers, we know they helped guide the surgeon’s hands and bring Declan back to us safely last night.  :)

Thank you

Declan’s surgery ended around 9:30 and he returned to his room in PICU around 10PM. Dr. Post said Declan was “rock solid” through both procedures and I’ll let Mommy give you more of the specific details later from their conversations with the doctors and nurses. (I know Mom and Dad were up until the wee hours of the morning.) We thank everyone for all the prayers yesterday and ask that you continue. This journey for Declan has just begun and we are thankful for each positive step along the way. Please keep Declan in your heart and in your prayers.

1st update!

We just heard from the Physician’s Assistant, Katrina (who we love, btw) and the majority of the tumor has been removed!  They had to leave a small amount on one of the arteries leading to the brain but they were able to remove everything else off the brain stem and the spinal cord.  :)

This is Declan’s twin brother, Cole…

…and his expression sums up about how we feel right now!

Now they are beginning work on moving the EVD (“brain drain”) to alleviate the leaking.  Actually they could be moving it internal, I forgot to ask.  Consequently, I’ve been fired from getting updates from the nurses/doctors over the phone.  Well isn’t that a fine how do you do? 😉 We are expecting another 2 hours or so for surgery.  If there is another update, Stan will be getting it.  :)  Otherwise, I will try to update later tonight / possibly tomorrow morning.

Thank you all for your prayers!!